Beautiful reminders
Kai has been honored by Cruz’s pre-school director, Suzy. She said that he was her inspiration to expand and move forward with a project that they were putting off. That his strength and bravery were a reminder to her that she could take on this new challenge. They recently poured some concrete near our entrance and cemented our Kai on their space forever. This photo, Kai in the heart, brings me so much joy every time I walk past it. Holding him, as I walk Cruz into class & back home, my heart is filled with love and gratitude.
As we continue to push on as a family, along the way we are shown such beautiful gestures of love. Many people reach out to say they have done fundraising in Kai’s honor and have something to give. They create meal trains that allow us some breathing room when we are bombarded by long hospital days, surgeries, scary scans & appointments, tough medications to administer, tons of moodiness and sadness, and the list goes on and on. Some send the kiddos things off their wish lists. They help create smiles. Gratitude. Love. Our hearts feel full and we allow ourselves to re-focus, to feel hope. You may not even realize how strongly you have affected us, although we do try to convey it.
What is happening to Kai is tragic and heartbreaking.
What our family is being asked to endure is unfair.
But with all the absolute heartbreaking shit that life hands us, also exists a constant reminder. A reminder that this community can lift you up when you need it the most. And we continue to need this community. We are grateful for it, every day.
Taking it back to late Jan 2021, when we were in the hospital for 3 weeks with Kai-our family stepped up. Patti & Donny drove up the 6 hours to NorCal and cared for Cruz. Without a second thought, they were there. Cruz thrived, he had a blast-we were blinded by fear and were allowed that peace. Our good friends, Justin & Kasey started a go-fund-me account for us. We could have NEVER imagined how much we needed that support. I went from having a lovely career, our family was co-dependent on my income, to not having one anymore in the blink of an eye, as Kai needed me full time. I was still breastfeeding and it was and still is pandemic hell in the hospital, with only 1 caretaker allowed to be there.
All of our friends and family have stepped in, in their own ways to support our family. It’s an incredible feeling, knowing we are being lifted during the hardest time in our lives.
The amazing company I worked for, Soho experiential, the two owners, the most kind and generous pair around, Rick and Jeff, and the entire team I worked with were there to ensure I still had what I needed during my time off, insurance and constant support. Chasen’s work, Apex Systems has been amazing and organized so many fundraisers for us. They have allowed him the flexibility he has needed when we require it.
When we were told CHLA could treat Kai, I posted that I could use the help finding all the things for when we arrived. One of those things was a place for Cruz to go to pre-school. FULL CIRCLE MOMENT OF ABSOLUTE LOVE. 20 years ago, I was working for a company and met so many amazing people. Aimee and I have stayed in touch throughout and she raised her hand and said she knew of an amazing school that her kids went to and reached out to the director. This director said yes to Cruz. He has been at home at this wonderful school since then and to say we are grateful is an understatement. Another great friend, Liesel, from the same workgroup, her daughter goes there and is in Cruz’s class. They are buddies. It’s adorable!! Liesel has helped us in so many ways and continues to be a bright light when I need one.
To date, 800 people have given to us. 800 people have opened their hearts and wallets and supported us. We would not be able to have given Kai the care he has needed and deserves without the help. It just would not have been possible. Thank you will never, ever be a sufficient word to describe our gratitude.
These past 16 months have been absolutely horrendous, yet we try every day to give Cruz and our family as much normalcy and love as possible. This community has lifted us when we needed it the most and we are constantly determined to find ways to give back.
Let me paint you a picture a very broad scope picture. This is just a part of our costs and we know there will continue to be additional costs ” if we are one of the lucky ones” as our doctors have reminded us over this time.
$15,000 to move our family to Memphis, TN (and store most of our things) for what was to be 6-8 months but was cut short because Kai’s cancer “came back” after 4 months and St. Jude refused us further treatment. Most services that St. Jude normally offers (housing and help) were denied to us due to the pandemic and the fact that Kai has a sibling. Splitting our family up was never an option for us.
Another few thousand to replace half our things that were lost in that move. The moving company refused to take responsibility and we had much bigger things to fight.
$10,000 to move back to CA when CHLA agreed to continue to treat our baby.
Over $15,000 in hotels and short-term rentals, baby rental gear when we struggled to find housing in both Memphis and LA.
$10,000 to transport our cars to and from. $5,000 in flights all over the country.
$20,000 in medical bills, doctors consultation fees, medicine, and supplies.
$9,000 to get Kai started on the clinical trial in Seattle.
*major replacement of my income while we quickly adjusted to one income supporting us.
I guess the moral of this story is that without the extreme generosity of every one of you, we would be in major financial distress as well as fighting our son’s cancer, and that is sickening. I’m sure it’s very common among families in this fight. and I hate that.
Simply put, thank you. From the bottom of. our hearts, thank you. I continue to be in awe daily by the force that is Kai’s community of absolute love.
Hugs, and please hold your loves close, every day you are given.
One Love.